The Role of Community-Based Participatory Research to Inform Local Health Policy: A Case Study

Abstract

The community of health services researchers in general internal medicine has played an important role in affecting health policy at the national and state levels. Community-based participatory research (CBPR) offers health services researchers an opportunity to identify and address health policy questions at the local level. We present the following four mechanisms by which CBPR might increase the ability of health services researchers to impact health by informing local policy. CBPR benefits community partners by allowing them to participate directly in the research process, gives academic researchers access to local data, enhances interpretation of research findings through an understanding of local context, and provides a natural infrastructure for affecting local policy through its community partners. For each of these mechanisms, we describe one example from a CBPR project conducted by one of us (M.O.). Considering the challenges and opportunities of conducting CBPR, future efforts will help describe how this emerging research paradigm can complement traditional health services research to most effectively inform health policy at multiple levels.

INTRODUCTION

Most health services research conducted by general internists is intended to inform health policy at the national or state level. Examples include evaluating the impact of existing national or state health policies and programs on patient outcomes, access to care, and economic indicators.^1–4 Health services research has also helped identify new targets for national and state policy interventions, such as geographic variation in healthcare quality and cost, and health disparities in racial/ethnic minorities.^5,6

Health services researchers have paid less attention to research translation at the local level. Community-based participatory research (CBPR) offers researchers an opportunity to identify and address local health policy questions.⁷ CBPR begins by developing an equitable partnership between academic researchers and community members who have direct knowledge of local circumstances that impact health.^8,9 This partnership identifies a health problem affecting the community and addresses it through research and action.¹⁰ By integrally involving community members throughout the research process, CBPR is often able to generate evidence that is both relevant and actionable. Researchers in general internal medicine have increasingly used this approach.^11–14

By conducting CBPR, health services researchers may be able to directly influence local health policy and the health of local communities. Reducing health disparities in racial/ethnic minorities provides an example. Despite a large federal investment in health disparities research, there has been little progress in decreasing these disparities.¹⁵ Although federal policies and programs are necessary to eliminate health disparities, it is up to local governments and organizations to implement those initiatives. Local policy can target the unique needs of minority communities and populations in ways that are impossible at the national level. Widespread research efforts to influence local policy might, therefore, have a larger aggregate effect on eliminating health disparities than research that only informs federal policy.

We present four mechanisms by which CBPR could impact local health policy. Although these mechanisms incorporate the guiding principles of CBPR,¹⁰ their application here focuses specifically on how this approach may inform policymaking at the local level. For each mechanism, we describe one example from a CBPR project conducted by one of us (M.O). The community partnership in this research began in response to a new Latino immigrant community’s unmet need for primary care. A coalition of community members, academic investigators, non-profit organizations, faith-based institutions, and governmental agencies has undertaken several research projects, and has founded a community health center in Philadelphia—Puentes de Salud (Bridges of Health)—to meet the health needs of this growing population.

CBPR: MECHANISMS AND EXAMPLES

Mechanism 1 CBPR directly involves individuals and communities to which it can provide direct benefits.Interventions developed through CBPR are informed by direct community involvement. This process helps recruit study participants,¹⁶ and also increases the likelihood that interventions will be acceptable in the community where they are implemented. Individuals can potentially benefit both from planning interventions and participating in them. CBPR studies that conduct surveys or analyze existing data may help community members better understand and advocate for health issues they have identified as important. CBPR can influence the services that partnering organizations provide, making their work more responsive to community needs. Local data may also play a role in sustaining partner organizations by helping them justify their services to funders.The first intervention study undertaken by the Puentes de Salud partnership focused on improving cervical cancer screening, an area of concern for community members. The Puentes de Salud coalition decided to implement and evaluate a community-based educational campaign to address the problem of low Pap screening rates. Guided by community members’ input, the group settled on using community health workers to teach women about cervical cancer and screening guidelines. This intervention consisted of two 3-hour group workshops on cervical cancer led by community health workers, who used an existing curriculum. The resulting randomized trial found significant improvements in all 6-month outcome measures: cervical cancer knowledge, self-efficacy, and Pap screening rates. A detailed presentation of the intervention, methods, and results was published previously in this journal.¹⁷ Since demonstrating its effectiveness during the 2008–2009 study period, this partnership has secured funding to sustain the program and offer it to the local Latino community through the Puentes de Salud clinic. Therefore, this research has helped build the capacity of the clinic and make an evidence-based health program available to a community of almost 25,000 women.

Mechanism 2 CBPR helps health services researchers access and generate local data that inform local problems.Survey and administrative data at the national or regional level provide important insights about health topics and help identify targets for intervention. However, the findings may not apply to every community. CBPR projects gather local data, which help researchers understand the key health problems and potential intervention targets in a local community. CBPR also facilitates investigators’ access to data collected by local clinics, hospitals, and community-based organizations (CBOs). The quality of such local data is highly variable, which is an important consideration when developing and maintaining CBPR partnerships. Since partner organizations often have limited capacity to analyze data, they are more likely to share their data with academic researchers if it addresses a research question defined by the CBPR team. Access to such data opens new lines of inquiry traditionally unavailable to health services researchers. These local data may inform more successful local policymaking than national or regional data.The cervical cancer study described above illustrates the utility of local data gathered through CBPR. National data indicate that 75% of Latinas have had a recent Pap smear, compared to 81% of white women.¹⁸ This relatively small difference suggests that increasing Pap screening would not be the most effective target for reducing the increased cervical cancer mortality experienced by Latinas.¹⁹ In contrast to these national data, the baseline data from our local survey revealed that only 47% of Latinas in our community had received a recent Pap smear; almost 25% of the participants had never had a Pap smear.¹⁷ In our local community, there was a clear rationale for intervening with community-based education about cervical cancer screening. Conversely, using the national data to design a local intervention might have “missed the target” since it “missed the problem” in this local community. Measuring Pap screening rates across all racial/ethnic groups in the community would provide important complementary data defining the magnitude of disparities at the local level—a future direction for our research.

Mechanism 3 CBPR promotes an informed interpretation of study findings, which is a critical link to effective local policymaking.In CBPR, community partners help academic researchers interpret research findings for policymaking by providing information about the local context. Community partners often have information about how local governmental agencies, CBOs, and healthcare institutions have already approached the issue being studied. Understanding such local experience helps researchers plan studies, contextualize their findings, and advocate for programmatic and policy changes. Without contextual information from community partners, researchers may develop misguided policy recommendations that neglect important previous experiences with the health issues they study.Puentes de Salud’s cervical cancer intervention¹⁷ included community partners in all phases of the research, including the interpretation of study findings. Members of this CBPR partnership could not identify any local factors, such as concurrent educational initiatives during the study period, which would have provided alternative explanations for the study results. It is often difficult for academic researchers to develop such knowledge of the local context without ongoing dialogue with community partners. In addition to citing published scientific literature in their grants and manuscripts, health services researchers should also consider citing local newspaper stories and discussions with local stakeholders to demonstrate an understanding of the local context and policy relevance of their research.

Mechanism 4 CBPR builds a natural infrastructure for impacting local health policy.CBPR begins with a dialogue between researchers and communities about a topic of shared concern. This dialogue helps identify other stakeholders who share this health concern. Academic investigators work with community partners to develop a systematic process for incorporating community input throughout the research process. After the research is completed, the resources and social networks of the community partners can be used to disseminate the research findings and mobilize a community for action. In addition, the CBPR research team represents an invested and informed coalition that can speak with a powerful voice in the local policy arena. Academic investigators in CBPR can use their content expertise to make policy recommendations as members of a diverse alliance advocating for a particular issue. Local policymakers may be more likely to address an issue if it is supported by an activated community of constituents and not by academic experts alone.Puentes de Salud was formed to examine and address local health problems. Along with other academic colleagues, one of us (M.O.) was approached by a CBO in south Philadelphia to discuss the local Latino community’s limited access to primary care. Other local health issues arose, including violence and unhealthy food choices in south Philadelphia neighborhoods. We invited the participation of other stakeholders invested in the wellbeing of this largely Mexican community—the Catholic Archdiocese, the Mexican consulate, and other CBOs. This diverse coalition decided that the most effective strategy to improve primary care access and confront other health problems was to create a new clinic that addressed the unique needs of this largely uninsured and undocumented immigrant community. Developing the clinic and its diverse programs required the resources of each partner. As it gained local recognition for serving this community, Puentes de Salud was approached by the city health department and immigrant advocacy organizations to discuss immigrant health policy in Philadelphia. Puentes de Salud leaders currently participate in a citywide task force charged with improving the health of Philadelphia’s immigrant communities, using the political connections of diverse partner organizations to influence policy.

DISCUSSION

Health services research has impacted national and state health policy, yet many health problems are affected by local policies and contexts. We have presented four mechanisms by which CBPR may increase health services researchers’ ability to impact health by informing local policies. Traditional approaches to health services research, which use regional or national data sets to inform state and national health polices, should be complemented by CBPR at the local level. Such an approach may produce more effective local programs and policies.

Developing and maintaining effective CBPR partnerships requires skills that overlap with those used by policymakers. Networking with stakeholders and developing a mutually beneficial agenda are the first steps in building a partnership. The subsequent phases of CBPR are also characterized by negotiation among partners. The Puentes de Salud partnership has faced challenges throughout the conduct of the CBPR efforts described above. These include reconciling disparate priorities and incentives, synchronizing timelines, and equitably allocating resources among community and academic investigators. The inherently challenging process of conducting CBPR as an academic investigator may provide an advantage in influencing local health policy. Similar skills underlie both the successful conduct of the research and its translation into policy.

The primary value of CBPR to health services researchers is that it helps them inform local programs and policies by involving non-academic partners. However, as the practice of CBPR evolves, it raises at least two key questions. First, what is the right unit of analysis or “community” size for informing policy change? For example, even if it seems logical to use a state-level analysis of data to inform a state policy, it does not mean that changing a state-level health policy will affect health in all communities of that state. Secondly, to what extent can findings from CBPR in one community be transferred to another? For example, can what was learned from Puentes de Salud in south Philadelphia be applied to the Latino population in north Philadelphia? Despite these challenging questions, CBPR remains a largely untapped opportunity for health services researchers—one that may open new lines of inquiry and bring mutual benefit to researchers and the communities they seek to influence. Future CBPR efforts will help define this emerging research paradigm and describe how it can most effectively inform health policy.